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Sjogrens Topics => Living With Sjogren's => Topic started by: Honeybee on June 11, 2019, 02:45:37 PM

Title: Awful itching all over
Post by: Honeybee on June 11, 2019, 02:45:37 PM
Does anybody have any experience of chronic itching all over?
I was diagnosed with sjogrens about 2 years ago having siffered from dry eyes for 15 years. Over the past few weeks I have developed a terrible itch that will not go, there all day and worse at night. My lovely soft cotton clothes have to be worn inside out to avoid seams rubbing and I have changed my cotton bedclothes for soft brushed cotton.
I only ever bath once a week as my skin is dry anyhow, never use bath products and use pure unscented soap as I have done for the past 10 years.
I use E 45 simple moisteriser as I have done for the past 20 years so not a lot has changed. Not changed washing powder.
I finally went to my gp who sent me for a chest x ray to check for poss lymphoma and blood tests. Have not heard from the urgent x ray so hopefully things are okay, bloods are fine but have revealved a loe TSH, preseumably nothing wrong with thr t3 or t4, so this may poss be a 'subclinical" thyroid problem. Low tsh indicates over production but I have not been losing weight etc, perhaps it can go high before it goes low? I do not know, but what I do know is at 54 and having gone throught the menopause 2 years ago, itching can be a problem.
I am so uoset, sitting here crying my eyes out as I cannot sleep with the discomfort. So, my question is this a sjogrens symptom and secondly what the heck can i do about it. I do not smoke, drink alcohol and have started using my cream twice a day.
My guess is that the menopause may play a part but I need to be able to address this and soon as I am getting very down now.
I would be so greatful for any help
Honeybee x
Title: Re: Awful itching all over
Post by: Sharon on June 11, 2019, 03:25:24 PM
Dear Honeybee,
Since developing SS I have had a suuden onset of all forms of strange allergic reactions.
Itching has been one of them. MCS (multiple chemical sensitivity) seems to be responsible for most of my itching.
I must use soapless soaps, fragrance-free everything and no detergents in laundry, no cleaning products with chemicals...I suddenly can't toerate rubber either.
You can try changing these things and see if it gives you relief.
You can also take moisturizing baths with oils used for dermatitis (almond oil is also good).
Mosquito bites in the summer can also set off full-body itching attacks if you're sensitive.
If all else fails, you can try taking Ketotifen which is a mast cell stabilizer (antihistamines are very drying).
Hope this may be helpful to you, I know the itching is maddening!

Title: Re: Awful itching all over
Post by: Scottietottie on June 11, 2019, 04:52:13 PM
Hi  :)

Check all medications and make sure that itching is not a side effect of any of them. I'm not saying they are - but it's always worth checking.

Take care - Scottie  :)
Title: Re: Awful itching all over
Post by: Headen on June 12, 2019, 03:04:57 AM
Is developing allergic reactions like that a common side-effect?
Title: Re: Awful itching all over
Post by: araminta on June 12, 2019, 03:57:17 AM
So sorry you are having this problem, itching is horrible, especially if it's keeping you awake at night.   I think we can put up with a lot of things if at least we can get to sleep at night.

Menopause is certainly a possible cause of this, and that type of itching should wear off in time.   

Stress can worsen itching, and it does sound as if you are getting very stressed, so anything you can do to lessen that and distract yourself would be a good thing.

I wonder if a cool bath with moisturisers in it would be a help before you go to bed?

I've been using Instituto Espanol urea treatment cream for skin dryness for some time, it seems very good.
Title: Re: Awful itching all over
Post by: Honeybee on June 12, 2019, 05:21:55 AM
Thank you very dear friends.
I never use any soaps, even for washing clothes, just on a boil wash.
Scottie. Checked meds and nothing popping up there. Am still wondering about this TSH(t4 and t3. Normal) low reading. Thyroid could be coming my way? A few weeks on and there is slight red patches and not just the scratch marks.
I tried an antihistamine last week and apart from stomach upset, it dried my eyes too much.
O jumped out of bed at 3 in the morning, striped off and walked around my house for an hour just to change the sensation. I thought my eyes were bad!....
Love Honeybee
I am interested in the oil baths and the other cream mentioned.
Title: Re: Awful itching all over
Post by: lorigacc on June 12, 2019, 06:17:12 AM
Hi sorry to hear you have this problem. I understand...because I HAVE IT TOO...and at times felt like I was gonna lose my mind (with not only dealing with the constant itching, but dealing with doctors who made no effort to figure it out).  I have both Sjogrens and RA.  Started itching a few years back, and for the longest time, thought it was due to sun damage. I was a sun worshipper in my younger days and thought the itching was due to damaged skin.  At that point it was mostly my back that was itchy.  It was never ending agony. Kept a letter opener near me at work...several bathroom trips to scratch against the wall...and then sleepless nights with more of the same.  At some point itching started everywhere else, showers made it worse, water made it worse, and any clothing against my skin made it worse. Finally went to a dermatologist...and they of course were not going to examine an autoimmune component..and so labeled it eczema and gave my steroid cream.  The cream helped very little. I think that I may be in a slight remission, because it is not as severe as it has been. I still hate taking showers cause the itching starts soon after.  Also, finding clothes is also a challenge. I feel like everyone thinks I'm a lunatic...but I know that this is real. I have also had thyroid issues, so maybe there is a connection. To hear that I am not alone, means a lot.  Please keep me posted on how things work out.  Hang in there :)
Title: Re: Awful itching all over
Post by: jazzlover on June 12, 2019, 09:17:02 AM
Have you been checked for Hashimoto's?

I have MCAS and MCS .. plenty of itching if I don't monitor what I eat. I have to eat low histamine and low salicylates well as low oxalates, so there's nothing left to eat.

I got rid of my rash, ezcema and most itching by going low histamine and sals and taking antihistamines. I also take cromolyn sodium for mast cell stabilizing.
Title: Re: Awful itching all over
Post by: Honeybee on June 12, 2019, 02:17:28 PM
Thank you once more for your advice.
Lorigacc. Sorry you have had this heck, intetrresting you have anticardiolipin antibodies, so do I. I read somewhere that some aps folk itch! And one of them said that when they take the blood thinners the itch can stop. I am not on any anti coag as when I passed child bearing the, they stopped it. (No children). You describe just what I am going through right now. I have not really got a rash, just a bit of faint redness. I do not think I will waste time with a dermatologist as I do not think they will help. Might ask to see an endocrinologist although I imagine they may not refer me as it's only the TSH that is out at the mo.
I also have interstitial cystitis so am interested in mast cells as that is closely tied up with ic.
I hope I can get comfy enough to sleep as although I am an artist who works from home, I completely am unable yo concentrate.
You have all been very kind and as I am low I really do appreciate it.
Title: Re: Awful itching all over
Post by: jazzlover on June 12, 2019, 03:10:43 PM
Honeybee... big connection between IC and Mast Cell Activation.

I would see an allergist/immunologist.
Title: Re: Awful itching all over
Post by: bluegardenia on June 12, 2019, 03:25:44 PM
itching cannot be related to peripheral neuropathy? I started the same myself since a few days. its not real itching its a sensation of itching but it moves around and scratching is useless. some drops  of valium help. I also noticed that if a mosquito bites me I feel the itching much more than a "normal " person and it lasts a lot like if I had the memory of the bite
Title: Re: Awful itching all over
Post by: irish on June 12, 2019, 06:14:08 PM
Sorry to hear that you are having so many issues with the itching. CAn drive a person hubby had this a lot when he was alive. It was related to his celiac sprue and also an allergy to his one asthma inhaler.

If you can find a dermatologist who has good praises from the community you might be surprised. Many of these docs know a lot about autoimmune diseases as most of the AID have a lot of skin issues. Also, the immunologist/allergests are really good to see as they  know a lot about many aspects of AID and allergies.

These 2 types of doctors are in short supply over the country but if you have someone who could give you a referral to the doctors in your state university system it could really help. Good luck to you and keep us updated please. Irish
Title: Re: Awful itching all over
Post by: Honeybee on June 13, 2019, 05:41:34 AM
Thank you again.
I  in the UK so will look around for a consultant who may help. I see Dr Price in Swindon who is sjogrens specialist but am not due to see her until next year as they have just cancelled my app.....
Honeybee x
Title: Re: Awful itching all over
Post by: Honeybee on June 13, 2019, 05:47:26 AM
Just to reitterate how grateful I am for all the advice.
I have made a list of some of your points, there seems so many possibilities so I may have to think of the most obvious given my diagnoses. I wonder if my GP will take the possibility of mcas on board, I will push that one.
Honeybee x
Title: Re: Awful itching all over
Post by: Skylar on June 15, 2019, 03:35:18 PM
Could it be something you are eating? We can develop allergies at any age. You might want to try an elimination diet. They are hard to do, but if you eat a limited diet of least allergic foods for a week or two and see no change then you can rule out food. Dr John McDougall has lots of information and a really good elimination diet on his website.
Title: Re: Awful itching all over
Post by: jazzlover on June 15, 2019, 08:07:09 PM
That is awful that they canceled your appointment!!

Could you trial some diet changes (low histamine or lower histamine foods) .. and even some anti-histamines to see if it helps?

Google is your friend ..... and we are too!
Title: Re: Awful itching all over
Post by: irish on June 15, 2019, 11:16:06 PM
I have been thinking and remembered some things that my hubby had to do that helped his itching. First of all, oils and fragrances on skin can really trigger itching. If you can find fragrance free skin creams this should help. Oils hold in the het of the body and will increase a persons itching. This is also true of vaseline. I worked on dermatology for a while and this is an old tried and true tradition.

Also, when you shower use just warm water as the warmer water draws the blood up into the skin and tissues and will really trigger itching. People will get such red skin and white blotches and want to scotch for hours. This is when an antihistamine helps. There is a newer antihistamine OTC now. It has been on the market by script for about 10 years and I use it often.

It is called Xyzal and the dosage is 5 mgm. This works like Benedryl with less side effects. Really helps with the itching and doesn't cause sleepiness. It may be more expensive but less sleepiness is almost worth it. I would check with the pharmacist and see if she has anything she wants to educate you on. Also, may want to know if you can cut the pills in half. Sometimes with spendy pills people will try cutting in half to see if the 1/2 tab helps them enough so that they can save some money. Need to ask about this though. Good luck. Irish
Title: Re: Awful itching all over
Post by: Honeybee on June 17, 2019, 10:54:01 AM
Thank you for your help Irish and folks.
I went out today and brought a natural or supposedly natural sunscreen, not tha I ever sit out in it but as I drive. It felt horriblso washed it of.
I have one bath a week anyway as I have always had dryish skin and now I jump on almost cool water,no soap and out again. I am wasting only loose cotton clothing. I am not sure if this is an allergy so to speak as I am not exhibiting running or inflamed mucous membranes. I have been taking an anti hodtami e on and off but it is of little help. I did look into mast cell activity syndrome but I do not think it is what is at foot here due to absence of other symptoms.
All I know is I went through the menopause at 52 and have sjogrens. There is an odd TSH blood test results but in the UK if you only test low TSH and normal t3and t4 they will leave it for 6 months!
Did buy some aloe vera gel and Aveeno so will see if it makes any difference. I am worried I will never get comfortable again.....i read so much on the menopause and the decline in sebum etc that given I have not been sleeping I felt that maybe that's it for me :'(
I need to be able to see light at the end of the tunnel again and am wondering if although we do losethe sebum production due to oestrogen drop, perhaps I will balance a bit more again. HRT is a big fat no for me as there is too much breast cancer in my family and I have had no children which increases my risk again.
Oh another day to get through......
The pharmacist this afternoon did wonder if the auto immunity sjogrens was the problem.
Thanks anyway for help. I have googled myself into a stupor these last few weeks and apart from depressing myself remain no further forward. Am I am normally so positive
Title: Re: Awful itching all over
Post by: Honeybee on June 17, 2019, 11:19:26 AM
P.s apologies for the auto correct spellings in my last post.
I did buy some flax seeds today, poss boost hormones? And I will start myself off on fish oil again.
I am vegetarian mostly but do eat a little fish now and again.
I have strictly followed elimination diets in the past and for a long time but I ended up quite ill afterwards so I may have to think very carefully before embarking on another one. I am quite slight anyhow. I researched anti histamine diets but as anti histamines make mo difference whatsoever I am a little caitious about that one. I do not each much sugar , drink or smoke. The only thing I can think of is I was taking and only once a week, 2 codiene phosphate tablets. So opioids are a prob for itching but 2 tablets a week which where stopped some weeks ago, I think I would be diverting energy in the wrong direction if I barked up that tree.
Title: Re: Awful itching all over
Post by: Honeybee on July 01, 2019, 07:54:35 AM
Just an update on the ridiculouse itchy scratchy skin episdode.
Still incredibly uncomfortable, seems impossible to imagine I will ever get my old more comfy skin back.......
My GP dismissed the TSH result as I knew she would. Nobody will even look at it without the T3 and T4 being abnormal, so with just the TSH levels slightly low, meaning its actually over producing, I have to wait and request another blood test a few months away. She even said there is nothing wrong with your thyroid, the tests are not that great, I am not so sure on that and have unfortunately been here before with Dr's. Before I was diagnosed with Sjogrens I was even labelled as having a somatic disorder, not something anybody wants on medical notes as it invariably unfavourably influenes other health care providers. She was very insistent I tried HRT and I reluctantly agreed, my menoause was over TWO years ago and I have not had any problems thankfully.
Personally after much research I am thinking the persistent all over skin discomfort is a little out of proportion for a drop off in oestrogen, sure itches and dry skin do happen but my skin feels as though it is having scratchy wool held against it all the time. Its very uncomfortable.
I want to think this will end, it has to end and I am hoping that it is indeed a sjogrens flare of some sort, I really do.
I will give the hrt a month as so far it has flared my IC to an extent not experienced fo 20 years, and I suspect that  nasty pain in my pelvis is the synthetic oetrogen fuelling endometriosis which had disappeared over the years. My GP is quite obsessed with hrt anď has oft?n mentioned it.
I am trying several approaches, diet etc and in the last week it has sl?ghtly ramped up. Frustrating x
Title: Re: Awful itching all over
Post by: araminta on July 01, 2019, 08:19:55 AM
So sorry you're still having this problem.   I can't think of anything else to suggest at the moment, but if I hear of anything I will of course let you know.  Good luck with the HRT.
Title: Re: Awful itching all over
Post by: irish on July 01, 2019, 09:57:29 PM
I do want to mention that the soap or detergent we wash out clothes in can cause a person to itch terribly. I had to wash all my hubbies clothes in a very mild soap. I used Lux liquid but I don't know if you have it in GB. Also, you would do well to see an immunologist as they deal with autoimmune, immune deficiencies and allergies. These three medical problems are very closely related and it is amazing what this type of specialist can do.

Itching can accompany any autoimmune disease just check out all the literature on line. So often body rashes and itching show up as the first symptom of some autoimmune diseases. Also, if you see another doctor you might want to ask about having a blood test called TPO. This is a test that measures the peroxidase in our system that is elevated when we have Hashimotos. Hashimotos is an autoimmune thyroid issue. One doesn't need to have elevated TSH to have an elevated TPO. Now, many doctors may not agree with that but there is much literature out there about this.

Remember that many autoimmune diseases are also accompanied by Hashimotos and hypothyroid. Also, just about all of us with autoimmune disease have been called a little crazy at times. I have psychiatric on my medical records....who cares. After I was diagnosed that answered that question. Doctors need to be more careful about throwing those diagnoses around. It does make it hard for us to pursue medical care as we have to be so darned careful how we say things to the doctors. Good luck. Irish
Title: Re: Awful itching all over
Post by: jazzlover on July 03, 2019, 11:15:04 AM
That is so terrible that they won't take care of your low TSH. Mine was not even showing up as blatantly low and I am being treated with Armour Thyroid. It does help a lot of symptoms.

It also affects the itching.

I take a combo of H1's and H2's .. I take generic Xyzal (I get it by prescription so it is cheaper) and Pepcid. The combo helps block the histamine being over-produced by the body. It should also help your IC.

Maybe you could also try Quercitin for the mast cells? It's natural.
Title: Re: Awful itching all over
Post by: Linda196 on July 04, 2019, 03:29:34 AM
TSH is Thyroid Stimulating Hormone, so a low reading indicates sufficient or too much thyroid hormone; as the amount of available hormone decreases, the TSH increases to stimulate the glands to produce more, so a low reading , especially with normal T3/T4 usually indicates that the levels maintained synthetically are sufficient.
Title: Re: Awful itching all over
Post by: Honeybee on July 04, 2019, 04:15:50 AM
Sorry Linda, forgive me but I am not quite sure what you mean? Do you mean that I have nothing wrong at all with the thyroid and the TSH test was completely meaningless? I understand the bit about T3andT4 as these are indicators. But when I rang the thyroid association they said that the TSH on its own can be an indicator of a subclinical level of distinction, so now I am doubting what they say! Oh I really am confused as we were going to pursue this with my GP.
What to do.....
Title: Re: Awful itching all over
Post by: Honeybee on July 04, 2019, 04:42:30 AM
Okay. So that is the thyroid ruled out, those TSH tests are clearly pretty confusing and I do tend to trust what you guys with your years of knowledge do say, so thank you Linda. I will stop thinking it could be subclinical start of thyroid.The thing I was thinking was my Mum developed thyroid disease at exactly to the age I am now but just because my Mother has it and I have Sjogrens do not really mean much I guess.
So the itching worsened overnight and I will have to think again but at least I will not bother my GP with the thyroid thing.
Thanks to Irish and Jazzlover for the good advice.
Honeybee x
Title: Re: Awful itching all over
Post by: Linda196 on July 05, 2019, 03:31:42 AM
I hope you don't take my post as a medical diagnosis because I'm surely not a doctor! My meaning was, in the light of you taking Thyroid supplementation, and having normal T3/T4 values, it could very well be subclinical hypothyroiditis, but that isn't necessarily a Thyroid issue. It may be over supplementation to a normal thyroid.

I didn't see if you have any hives with the itching, which would be a very good indicator of MCA or other AI mediated itching.

I didn't actually realize this until I was doing some research based on your question, but the incidence of autoimmune puritis (itching) in Sjogren's Syndrome is 42-53%!  scroll down to the section on Sjogren's Syndrome.
Title: Re: Awful itching all over
Post by: Honeybee on July 05, 2019, 05:51:22 AM
I have pm'd you.
Sorry I did not mean to burden you with my "thinking aloud" in placing your advice above medical advice, although to be honest it is probably just as relevant!
I am going to pursue the thyroid on thinking again, another test in a couple of months is needed really, if the tsh remains low, I will insist on an endocrinologist. I owe myself that one.
I have stopped the HRT as I am not at all happy with the state of my bladder whilst being on it, neither do I like the way it has made me feel within myself, somehow it feels like it does not suit me and given the fact I have anti phospholipid syndrome, I really do not want to risk a clot, i have noticed a slight lacy  poss livedo rash on my legs for the past 18 months so I am wondering if it is active again. I am a little annoyed my GP ignored that concern and just said how well her other  patients did on hrt......
I do not have hives with the itching so am not sure if mast cell activity is involved in fact aprt drom slight redness the skin surface is smooth. However, I am not going to rule out some kind of histamine release. Interestingly at the time this started I was taking codiene phosphate, only once a week and then only 2 tablets one night in the middle of the week, so not compounded heavy use, but, I had been doing this for 6 months or so. I stopped when this started so I just do not know.
But as Linda and Irish have said, AI's can do this to the skin, and moisterising it is not making any difference but I dare not give up with it. I get in and out of a cool bath once a week. I hate the water now.
Anyway thanks so much for your help, I think I would feel very alone without it.
Honeybee x
Title: Re: Awful itching all over
Post by: katie1111 on July 14, 2019, 05:30:48 AM
Chronic itching is one of the main symptoms of PBC - Primary Biliary Cholangitis - which I have.  It is an autoimmune disease of the liver.  What works for me is oatmeal based soaps.  Some are more effective than others.  You have to experiment.  One of the best that is available it most drug and grocery stores is St. Ive's Oatmeal and Shea Butter.  Another is Grandfather's Oatmeal soap and one that you can order on line is Getaguru handmade olive oil soap with oatmeal from www.

Title: Re: Awful itching all over
Post by: irish on July 14, 2019, 10:41:53 AM
Just a reminder that one needs to have a doctor check out the PBC possibility....blood work whatever. There are so many issues that the Sjogrens can cause. It is really sickening that all they mention in relation to Sjogrens is the dry eyes and mouth.

The gastrointestinal tract is now finality being researched and it is being found that so many issues can be caused by the workings of the colon and other organs such as liver, etc. There are so many enzymes and other secretions that are important that we didn't know about before. I just read that they are thinking that Parkinsons could be caused by the involvement of the Gastrointestinal tract, etc.

Kidney function issues can also cause itching. Does your doctor understand how bad your itching is? Just for your information , there are some women who have issues with their liver when they are pregnant and they will get a little yellow and itch just terrible .....after they deliver the problem goes away.

This just goes to show you that there are so many weird things that can happen to the human body and we, and our doctors, need to always think outside the box. I have been blest with my last 2 internists who have been over 40 and know that things do't always go by the book. If I tell them I have something going on and that I have been through something similar they are good about listening to me.

It takes a long time to get to that point I can tell you. We argue our way through health care the first few years it seems. This is why it is good to document our symptoms,medications reactions and dates, etc cause we can go back and prove things to our care givers. Good luck. Irish
Title: Re: Awful itching all over
Post by: Honeybee on July 15, 2019, 06:36:43 AM
Irish and Katie
Thanks again for your replies.
My liver is okay as the LFT were fine on the bloodwork, but a good idea anyway.
So, a few months into this now. Its not only itching on the body, the skin feels as if I have scratchy wool held to it, even my softest lovely cotton t shirts with the seams now on the outside are murder. I have brought lots of cotton t shirts, cut them up made them bigger and overlocked them into new designs, I have 3 overlockers as this constitutes my employment as a textile artist. My lovely pretty clothes sit abandoned in my wardrobe and I am frump lady central! Yesterday it was so bad I drove back home, ripped off my clothing and sat naked apart from some knickers with the elastic cut out. Lovely.
Another lady on her did post a similiar thing. I looked up small fibre neuropathy and discounted that as my sensation does not match that, no burning, tingling or pain, although it is as annoying as pain. But I do not think it is that.
I am in the UK so have tried many different creams, and tried not using moisturiser as well. I think there is a moisturiser trap, in that you use this stuff on your skin as you are advised and the skin craves more so by the time you are finished, the skin is getting even drier. I am limiting it to once a day now as I am breaking out in pimpels. And it is not making much difference to the sensation.
I am on a small dose of mirtazapine, Remeron in the states I think. I have rung several pharmacists and they all say no it will not cause this, BUT, I also know it has an antihistamine action and I cannot tolerate anti histamines as they dry me out. I have been on this for 20 years at a very low dose but it is hellish to come off of, not because you get your symptoms back but within a day, you are unable to sleep and you do lose your apetite. I was originallybput on it when I was in a very bad relationship with an ex partner, and basically it has always helped me sleep. Trouble is I am going through this and not sure if it is even causing the problem and withdrawing from it is by all accounts far worse then the literature has you believe. They actually give it for intractable itching, but there is a paradoxical thing with some medication and it may be that the action over 20 years is now causing some kind of reaction. Or of course itis another gift from Sjogrens.
I cannot get back to see my gp for 5 weeks as that is how the nhs is at the mo so have to cope really. And to be honest I am not sure she will be able to do anything about this, apart from refer me to somebody in the long run.
I am normally quite cheerful but feel really miserable today.
Thanks for your help folks
Honeybee xx
Title: Re: Awful itching all over
Post by: Carolina on July 15, 2019, 06:54:03 AM
Dear Honeybee,

I'm so sorry you are suffering this way.  I have many reason for terrible itching in my life (eczema, reaction to drugs, neuropathy).

The strongest all over itching was caused by medications containing codeine or codeine analogs.  I doubt if that is your problem since I don't think codeine type medications are used much in the UK.

Oral estrogen supplementation also caused all over itching, come to think of it.

I suppose you have tried the antihistamines like Benedryl (don't remember generic name right off),

Wishing you the very best and relief from all itching.

Regards, Elaine
Title: Re: Awful itching all over
Post by: jazzlover on July 15, 2019, 07:06:59 AM
Also consider looking at a low histamine diet.  That helps me.

I am sensitive to salicylates, so I have to avoid any foods that are high in sals, along with any body care products that contain salicylates.

One big thing for me is that I don't eat leftovers. Protein is the worst about having high histamine from being cooked too long or just sitting in the refrigerator.

If I cook something and want to eat the leftover, I will freeze it immediately, then thaw it later.

If I buy several chicken breasts, I will freeze the ones I won't be using that day.

Hope this helps!
Title: Re: Awful itching all over
Post by: irish on July 15, 2019, 09:07:01 PM
The way you describe it today reminds me of some of the issues I have with my hands. I have lots of neuropathy inn both hands ...either from so much carpal tunnel and ulnarcompression or from the spinal cord compression I had prior to my spinal fusion.

I feel like the ridges on all my fingers are about 1/2inch deep and my fingers hurt like crazy and burn at times. Hard to use the keyboard and to even do other chores. It literally pulls up into the nerves in my upper arms. Had more MRI this past week.

Your problem sounds a little like this only different. :D

Has the doctor tried using Gabapentin on you. This is an old drug that is given to many, many people for neuropathy issues. There is another drug in the same family only newer and more spendy called Lyrica.Diabetes use this a lot for the neuropathy of their feet. Just a thought. This may not be a true itch at all but a sensation related to nerve dysfunction.

I know that my hands get to me and the only thing that calms them down is to put on some disposable vinyl gloves. The slight pressure on my hands knocks then pain back a couple notches so that I can stand it. Also, my hands don't sweat at all and with the gloves on I will build up a sweat by morning which feels good. Ain't it fun. Seriously, I do hope that you can find something to help. Maybe some cannabis oil will help./ I am serious. Sometimes I think of asking about it cause  have so much back pain and hand pain. Thankfully is sort of lets up at times so life gets better. Take care. Irish
Title: Re: Awful itching all over
Post by: Honeybee on July 18, 2019, 06:06:53 AM
I am thinking that this is some kind of dry skin issue. It's not flakey but its lost its sheen. I have read more posts and some sound a little familiar with the sensation.
My face has always been dry and I have always used cream. But my body has never felt like this. None of the creams make much difference but I will not stop moisterising.
I really hope this is a flare, flares of my eyes last up to 8 months and never go back to normal.
It's difficult finding a moment to get comfortable as clothing loose and cotton still makes little difference.
To be honest judging from some of the dry skin referred to dermatologists , they are that interested. I am probably alone with this.
I have an Etsy shop and at the moment am finding it difficult to concentrate on stocking it and neither can I model the clothes I make as they are wool. I did stop making them for a couple of months to see if it was the wool, but it made no difference. I cut up old wool jumpers and upcycle them into pixie hooded coats you see, very careful with hovering after every cutting session.
I think this is a deep skin sjogrens thing.
I am taking fish oil  as of a month and now borage oil as of a week. I did start the pilocarpine again as somebody reported on here that it had also helped her skin, but I had not noticed any difference.
Sjogrens, age and poss subclinical thyroid could be all to blame.
Oh, and I do have low iron stores for which I am taking iron and vit c camu camu berries for the last 12 days. Itching dryness is mentioned with low iron too.
I feel like this is worse than my eyes and mouth and bladder all in one. I just need to see some light at the end of the tunnel and then I may have hope.
Title: Re: Awful itching all over
Post by: Carolina on July 19, 2019, 09:16:29 AM

WOOL is my nemesis.  If I were wearing or working with wool I would itch uncontrollably.

Even once doing cross stitching with wool yarn was impossible.

Hoovering won't help because the wool fibers can be in the air.

I can't even eat lamb or anything made with sheep's milk.  I just throw up.

Regards,  Elaine
Title: Re: Awful itching all over
Post by: irish on July 19, 2019, 11:19:11 AM
I can't wear wool either. It makes me itch and even the thought of it makes me itch. We raised sheep some years ago and I can tell you that even the she eps wool is irritating  when they wear it. You have to wear long pants, long sleeves and gloves if you are sensitive. The wool contains a type of lanolin that I also think has some connection to the itching. It makes ones skin just raw to brush near the sheep.

Once they are sheared for the summer it is not nearly as bad until it starts to grow out again. Good luck. Irish